How Listening to My Gut and a New Symptom Saved My Life

I have been chronically ill for over 10 years now. I don’t even remember what it’s like to feel normal. I’ve come to terms with being in pain every day and having to pay extra attention to everything I do. I’m lucky enough to have an excellent support system, and for the most part my symptoms have been pretty predictable.

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But a few months ago, I experienced a new symptom. It was these severe cramps that were worse than anything I’ve ever felt. The pain was in my lower stomach, but I could also feel it near my colon. I immediately had my husband bring me to the ER. They took an ultrasound, saw that I had a cyst and chalked it up to that. I’ve had cysts before and it never felt this bad but I took their word for it. A few days later, the pain was still there and I just knew in my gut that something was wrong. I went to my gynecologist, urgent care and the hospital almost every day after that. They all said the same thing.

After about two weeks of this, I went back to my gynecologist. My brother was getting married the following week and I wanted to have this figured it out before I had to travel out of state. I was told that if I wanted to have the cyst removed I could, but I didn’t need to. I wasn’t given a direction either way, just that it was up to me. If I did the surgery, it meant I may not be recovered in time for the wedding. And surgery could be an unnecessary risk. But if I didn’t get the surgery, my fallopian tube could twist and would be extremely painful. And If the cyst hemorrhaged while I was on the plane, I could develop blood clots and even die.

My husband and I decided I should go to the hospital again. When I got there, I had another ultrasound. I must have been questioned five times if I was sure I wanted to do the surgery. And I wasn’t sure, I was freaking out. But doctors weren’t telling me what to do, it was completely left up to me. I was told it may take a few hours to a few days for there to be an operation room available. At the time, my parents were suppose to be driving to Maryland for the wedding. I encouraged them to go, because it was just a cyst and I’d be fine.

The next thing I knew, a doctor came in and said they took a closer look at my left ovary. He said that it looked abnormal and told me that it looked like it may be cancer. He also said if they go in to operate, my ovary could rupture and the cancer would spread. And before I had time to think, I was rushed into an antiseptic shower and taken into the operating room. At the time, it was still just an exploratory laparoscopy to examine my ovary and remove a cyst. My body’s been through a lot, but this was the first time that I really felt like my fate was out of my hands. I’ve had a few surgeries before and I never minded them. They always turned out fine. But this time, I was terrified. While they were prepping me for surgery, my husband sat by my side. I told him I loved him with the fear that this was the last time I’d ever see him. Or that this was the beginning of a long and horrifying road.

Hours later, I woke up from surgery. All I felt was pain, I couldn’t think about anything else. I was given more medication than I’ve ever been on. It helped with the pain, but it made me so messed up that I didn’t know where I was and spent the entire night throwing up. It wasn’t until later that night that I was finally clear enough to understand what was happening. This was when I asked my husband how the surgery went. He told me they removed my ovary and fallopian tube. The doctors told him that my cyst had hemorrhaged. The blood clotted around my ovary and my ovary stuck to my bowels. After a while, my blood stopped clotting and my stomach filled with blood. This all had happen in those two weeks that I went back and fourth to the doctors and hospital, insisting something was wrong. All this happened, and it was not detected on the five ultrasounds I had.

And look, I’m not blaming the doctors, they discovered what is was and fixed it before it was too late. But if I didn’t listen to my gut, I wouldn’t be alive today. I am so grateful that it didn’t turn out to be cancer and that I am OK. But I lost two of my reproductive organs. Thats a big deal. I’m desperately trying to have a baby and although I can still technically get pregnant with only one set, it’s a lot more complicated now. And to top it all off, this whole ordeal must have cost at least $1,000 and that’s with having insurance. I know this is an extremely specific experience, but I have to imagine there are others like me who were dismissed when they stressed that they knew something was wrong, only to have been right along. And it’s not that I care about proving anyone right or wrong, I just want to stay alive.